Autism

I had a little eye opener yesterday at my daughter’s therapy session. We were discussing her habit of not saying ‘Please’ or ‘Thank You’. I found it rather odd that she seems to refuse to say these common niceties. The reason behind her refusal has always eluded me.

I was raised saying Please and Thank You, my Mother had always demanded courtesy from us, and it would even go so far as to not pass a dish at the dinner table because I didn’t say ‘please’. This was how I was raised, and of course, this is how I raise my children. Even my eldest daughter has carried on this courtesy with her children. I wouldn’t say our family is obsessive about it, but good manners usually opens doors in life. People appreciate being treated politely.

So it shouldn’t be a surprise at my consternation when my youngest daughter would refuse to say those words. She has had this habit for as long as I can remember. When she was younger, I didn’t put much thought into it. Four year olds tend to forget, so you remind them. However it was around seven that I noticed she refused to say Thank You. Please would only come out on rare occasions. I worked with her, withholding items till she said the magic words, but she only did it begrudgingly.

It was last year, when she was eight, that the problem became more than learning, more than some sort of joke to her. She wouldn’t say it for the life of her. Alexis seemed more upset that I wanted her to say Please and Thank You, than I was she didn’t.

“Alexis, if you want me to get you a glass of milk, say the magic word.” I would say. Then one day she looked at me and said the magic word.

“Abracadabra.” She said. I laughed, probably shouldn’t have, but it was funny. That became her ‘Please’. She started to use the magic word every time.

I still worked on Please, even discussed with her that while Abracadabra is the ‘magic’ word it wasn’t what I meant by magic word. But to Alexis, Abracadabra is the factual magic word.

The term “Magic Words” came from my mother. When my sister Karen was going to Kindergarten there was a sign above the classroom door.

“Remember the Magic Words: Please and Thank You!”

My mother, always into manners, remembered that phrase and quoted it often. My mother was no Miss Manners, but she did believe in being polite. Until she was mad, then it was best to run. politeness took a backseat for a bit.

I’m not sure how my mother would have handled Alexis’ refusal to say Please and Thank You. Probably would have driven my mother mad I’m sure. I know Alexis drives her sister Jenelle mad by refusing to say those magic words. My grandson BenBen says Please and Thank You, as with other niceties, even as he is being a holy terror. Yet as he holds a bag of potato chips, that he had just dumped on her floor, he will say “I’m sorry”. Jenelle and BenBen are still working on those connections with being polite and acting polite.

Yet while in therapy, when Alexis refused to say Thank You when offered a page from a coloring book, I mentioned this peculiar habit to the therapist.

“Well it’s not literal. If you stop and think about it, why do we say Please and Thank You? It’s an emotional response, a social niceties, but it has no practical value.”

The therapist then went on to ask me if she says Please for specific items. Alexis will say Please for wanting specific things. Yet those are more built into our language. She knows to say Please if she wants us to buy her a toy, or to go to restaurant. However Thank You is harder. Because why do we have to say “Thank You”? What value is that phrase?

In reality, Please and Thank You have little value. Unless you look at it in the terms of socialization. We say these phrases, along with a host of others, to be nice to each other. Many of those phrases aren’t even practical. When you ask someone ‘How’s your day going?’ Rarely do you wish to know how their actual day is going. It’s just a common phrase we use as a greeting. You may exchange a few words, but a detail accounting of their day’s events isn’t expected as an answer.

If you have ever dealt with persons to whom English is a second language, even worse, American Slang as second (practically third) language. You have just had a taste of what it is like to talk to someone with autism.

Alexis isn’t being rude, it’s not like she doesn’t “Know Any Better”, it is simply that she finds such phrases and niceties absurd. Why? Why do we say Please? What is the value of Thank You?

For me, it may be a consternation. Raised with a mother who valued manners, who valued the Magic Words, and now with a daughter that finds such words absurd.

Apples from a friend.

Take these apples in the picture above. As I was writing this blog, Alexis came in to show me them. The young neighbor girl brought over apples from their backyard tree. These two are for my son and grandson. As Alexis handed them to me, being very specific as to tell me which apple was for whom, I said…

“Did you tell her Thank You? Because that would be nice.” Alexis smiled at me like I was a half-wit. I could see her thinking ‘Why should I say Thank You? She gave them to me, I give her things too, we’re friends, that’s what we do.’ She just looked at me and walked off. I went outside to tell her friend ‘Thank You’ to which she replied ‘You’re Welcome’. Alexis looked on disinterested in this little exchange.

The Magic Words, as with many of our social niceties, open doors in life. They let people know you care, that you have empathy for them. From, “I’m sorry for your loss” to “Congratulations!” we use these phrases to let other know we care. Alexis cares, but finds our language to be a ‘bit much’.

So, I continue to look for the Rabbit Hole, hoping to find it. If for nothing more than to have her say those Magic Words.

The sarcastic Cheshire Cat. Illustration by John Tenniel / Illustration from Wikipedia Commons.

By Js Kendrick.

A week ago today I was asked to do something I thought was impossible. Stop being sarcastic. Now, very few people can ask this of me and actually get me to even think of doing that. My daughter Alexis’ therapist is one of those people.

Alexis, my 9-year-old daughter, is a high functioning Autistic. Most people wouldn’t even notice what I have been learning to notice. They would pass it off as bad behavior or that maybe she was tired, hungry or just having a bad day. Yet people do catch that Alexis is sarcastic.

Yeah, that ones on me.

To say I speak to others sarcastically is putting it mildly. Usually it is in good fun, to keep thing from getting tense, or just because that is my nature. My conversations drip with sarcasm. If you call me a ‘Sarcastic Bastard’ I will just profusely thank you for the compliment. Sometimes I get so bad I have to say, “No, actually I’m being serious”. Just so people know I am. Even then I might have to convince them.

Yet Alexis, who has a father who jokes, says the wildest things, and teases (nicely) all the time, well, she doesn’t see the difference. She thinks speaking sarcastically is normal. You know? because that’s how daddy talks.

Alexis and I ‘smiling’. She started to ‘look mad’ for smiling about a month ago.

So, I’ve had to stop being sarcastic. Okay, around her. Let’s be real, if you are a sarcastic person, stopping is nearly impossible.

However I know when to stop. I don’t tell a Police Officers who pull me over for a broken tail light that, “I am surprised you guys finally found me”. Or tell my boss when he asks me to come in early that “Sorry, I’m still on the North side of Mt. Everest, can I come in at my normal time?”. I do know when and where sarcasm is acceptable. Alexis can’t filter that.

Here is an example of how her mind works. The other day we watched ‘Fantastic Beasts and Where to Find Them’. It’s a good little movie set in the Harry Potter Universe, by author J.K. Rowling. If you know anything of the Harry Potter Universe you know they have all sorts of creatures. Which of course is part of the movie’s plot line. When I asked my kids if they wanted to watch it again, having to call it the “movie with all the magical creatures in it”, she said to me:

“Yeah! But they’re not real creatures are they? Because they don’t exist. It’s just made up right?” She asked. Her brother Nick, who is 6, said to her they were just ‘made on a computer’.

Now you might think, as I had in the past, she was just confirming that there are no such monsters like that in the Real World. But that isn’t what she was doing. It wasn’t out of fear, but out of the need to reaffirm that there is a difference. Differences trouble Alexis. It’s the simply social cues that we take for grant that she struggles with.

As her brother Nick knew right off the bat, those creatures do not exist. Alexis knew, but wanted a confirmation that they were fake. She does this often. Confirming if something is funny, or scary, or dangerous, or true. Truth is important to her, along with facts. She often tells me why I am incorrect, because the facts don’t support my statement.

Thus the problem with sarcasm. Sarcasm is literally speaking the opposite of what is the truth.

“Wow, you just hit your thumb with a hammer, did that hurt?” I may be asked. To which I would respond sarcastically. “Oh no, I do this once a week just for fun”. Obviously a contradictory statement to the facts.

Usually when I hit my thumb with a hammer it involves very Bad Words and sarcasm. As in “Well that blanking felt lovely”.

So discerning the difference is hard on Alexis. So she has learned to be sarcastic. As you might have guessed, this isn’t a quality you want in your 9-year-old. Especially with school right around the corner.

My project for myself this past week has been dropping my sarcasm as much as possible around her. Try to be more Black and White in my speech so she picks up that and not the reverse snarky speech of sarcasm.

[Illustration by Sir John Tenniel / Wikipedia Commons]

By Js Kendrick

We went to a wedding this past weekend. It was a lovely event, watching two young people start their lives together. I, my son Nick and my daughter Alexis were part of the wedding party and…

We went to a wedding this weekend.

That whole week before I fretted. Who was going to show up at the wedding? Alexis or Autistic Alexis? Yes of course they are one and the same. Yet one is a playful child that laughs and jokes with her cousin and brother at family events. Who is silly and willing to do all sorts of tasks asked of her. The other lives in a world of fear, one where emotions and tasks become crippling and she retreats into herself as a defense mechanism. I was unsure, I was worried.

I had been warned by her therapist. “You know, you will need to leave when she is done with the wedding.”

Meaning that when it becomes too much for her to handle. When the emotions become too hard to process, we would have to leave the hustle and bustle of the wedding. I planned to do as much, I had made a contingency plan. Take our car to the wedding and from there, the reception, leave when we needed to. What’s that saying? ‘The best laid plans of mice and men often go awry’? Of course nothing ever goes the way one plans. I had a learning curve lurking around the corner.

That Friday night we had rehearsal, then a dinner afterwards. Rehearsal went fine, silliness and solemness abound as we practiced for the ceremony. The Reverend fielding questions from the adults, the children just nodded as they listen to instructions. Everything seemed fine. I felt a bit of relief.

Then at 2:30 a.m. I was awakened by Alexis.

“My tummy hurts, can we go home?” We were in a hotel room, a town some 40 miles from home. We had, like most of the wedding party, booked a hotel room for expedience. Easier to be there in the morning than to drive the distance to the Church. I looked at her and calmed her down. Asking her to lie down and not to worry, we could talk in the morning. She needed an ear to calm her fears, I hoped mine was good enough.

In the morning it was trying to keep a semblance of routine. Routines are good, you know what to expect. Weddings, for all their joy and zaniness are anything but routine.

There was the bath, the hair, the dress. The dress! The one she refused to try on for weeks on end. The one that I finally got her to try on only a week before the wedding. The one she told me she hated and didn’t want to wear. The one she now, on the wedding day, loved.

Yet she was dressed, she was pretty, she was in a good mood. I relaxed a bit, having more struggles getting a 6-year-old into a tuxedo.

So we rode to the wedding in a limo / bus. The bridal party going before the grooms party. Yet she loved the bus ride. She was enjoying herself with mom and her soon-to-be aunt. It was, as Alexis told me later, “girl time”.

At the wedding all my fears were washed away. Alexis, as an accompanying flower girl, walking down the aisle with her 4-year-old cousin, very carefully dropping color coordinated petals. For they were yellow and blue, can’t mix them up you know. Order is very important. And she stood next to her soon to be aunt and was happy.

During the lovely ceremony, the groom and bride assembled a unity cross. Two pieces of a cross held together by three pins that represented the trinity. Although the meaning behind this was two becoming one with God, I had a different take.

Some assemble required.

Because in life, some assemble is required. All marriages are work, a lot of work. If you assemble your life correctly, not to fret over the little hiccups, and stick together when the storms hit. You will assemble your life and enjoy the blessings of marriage.

Yet it is also a mirror of autism. As a parent I work at assembling the life of my daughter, so she can enjoy the most out of life. Alexis is high functioning, so it may seem a little self-serving for me to worry about her, when so many others struggle with more profound issues. But I do, of course I do. I’m her father, I worry about her as I do my other three children. I’m also new at this autism, so I feel inadequate when problems arise.

The wedding went off without a hitch, everyone preformed their job perfectly. Even the Bride and Groom said the right words…you know, the I Do part.

It was the reception, the one I had planned to make my escape from that became the issue. Both my wife and I had taken the bus. We didn’t have our car. We were ‘stuck’ at the reception from 5 p.m. till 10 p.m. when the shuttle bus would arrive to take us back to our hotel.

Yeah, that plan of mine went south quick. Oops!

Loud music, people laughing and talking, crowds of ‘strangers’ walking around you and a place you had never been to before. Alexis left, someone else took her place at the reception. Someone that couldn’t process all the commotion, who felt overwhelmed.

“Daddy I want to go home.” I was told in a terse whisper. On the verge of tears, she put her fingers in her ears as the music played.

Now what?

“Hey let’s go outside okay?” I asked her, she nodded and we went outside to the quiet. The reception was held at a golf course’s club house. A nice place, a quiet place.

Outside Alexis wanted to know when we were leaving. I silently cursed myself knowing that, short of a taxi, we weren’t leaving anytime soon.

Then she found the rocks. Large boulders of different shape and sizes that circled a large tree. She got up on one rock and as she asked about leaving, started to go around the tree.

“Daddy help me?” She pointed to a gap between the rocks. I took her hand, pointed and told her where to put her foot so she could make the gap and we went around the tree. She smiled, giggled, we did it again. Then she did it by herself.

“If you feel you need to come outside again, let me know okay Alexis?” I said to her as we walked hand in hand back in. She looked up at me, a question of the greatest importance was forming.

“When are we having cake?” Alexis asked me.

We went to a wedding this weekend.

We went back out twice more. Then she played on the putting green with her brother, cousin and friends, we danced, we laughed, we had seconds on the cake.

I had learned to redirect my daughters breaking point. I had beat the learning curve…this time.

In life, some assembly is required, sometimes that assembly is oneself. Learning new ways to handle new problems, new situations and hurdles.

By Js Kendrick

It has taken me a little while to understand it, maybe accept is a better word. Yet for all intents and purposes I can’t escape it.

My daughter is autistic.

We were given this news at the end of this school year. After trying to figure out why she didn’t want to attend the last three weeks of school. She just refused to go, to our dismay and bewilderment.

After dealing with stomach issues since kindergarten we took her to the doctor only to be told that autism was a possibility. Stomach issues, it seems, is one of the tell-tale signs that someone may be autistic.

We did the assessment, are doing the therapy to work on her anxiety, have scheduled an appointment with the neurologist. Going through the gamut. Waiting to get the full diagnosis.

My daughter, Alexis, is 9 years old. She falls on the high-end of the Autistic spectrum. From what they can tell if the autistic spectrum was equated to a rainbow spectrum she would be an AM frequency. Aspergers is what it used to be called, a High Functioning Autistic. Probably why it took 9 years to figure it all out. That and 3rd grade.

3rd grade was hard on Alexis, she likes structure, things in their proper place. Routines. Yet 3rd grade was anything but. With three different teachers by the end of her first month of school and a child in her class with emotional issues, it became too much. The child with emotional issues threw a chair that whizzed by Alexis, and that was that. She refused to go back. She was done.

Honestly? I was pretty pissed at the kid, and the school. Still a tad pissed at the school since this wasn’t the first instance of that kid having a tantrum that resulted in throwing objects. However if it wasn’t for that incident I wouldn’t have found out. Literally a blessing in disguise.

Yet, and this is a big yet, I had always suspected ‘something’. I was confused by her behavior sometimes. She is intelligent, friendly, funny and loving. Alexis will look you in the eye and talk to you. She will hug you, talk to you, play with others just fine. But, well, sometimes. There were clues I never caught. Seems autism is an evil little tailor who never makes the same suit for anyone. Each case is as individual as the person it affects. Everything I had known up to that point about autism just didn’t fit Alexis.

Before 3rd grade, way before I knew what was going on, I had a child that baffled me. The “What in the fuck is wrong with you?!” child. I know it is a horrible thing to say, or even to think, but she would do things I could not fathom. Behavior that was just too unpredictable for me to comprehend. Getting upset at the silliest of things. Denying that she did something when I saw her do it. Laughing when something happened that would make most of us awkwardly silent or empathetic.

I convinced myself this was just a phase, even the teachers told me her silence in class was a phase she would grow out of. Alexis didn’t start speaking in school until 1st grade. Not talking in pre-k nor kindergarten classes. Even this past school year she whispered, didn’t speak at school. Well, not in the classroom. At public events nights at the school she would talk to everyone, even her teachers. They, like us, were baffled. We all assumed she was just shy in class.

Anxiety, that is what we thought, even what the school thought. It was only when we took her to the doctor over her stomach issues, constipation, that the doctor questioned her behaviour. She was acting below her age level. She recommended an evaluation.

That is when we found out. Denial became my friend, the little bastard is still lurking in my mind.

My child isn’t autistic, she’s just…

As the therapy moves along for her anxiety (actually the therapy is for me and my wife to learn how to deal with her anxiety/autism) and I do the reading, the research and the learning curve that is the steepest I have ever gone up I have come to a horrible conclusion.

I can’t even find the rabbit hole.

Like Alice, my daughter has found her own wonderland world. She sees our world through hers. In her wonderland world she is just fine, everything makes sense, has a purpose, it fits. But we, society, force her to live in ours. The two worlds are not always compatible.

My biggest issue with my daughters autism? I’m a Dad, and well, we dad’s fix shit. That is what we do. That is our ‘purpose’. Fix the problem.

Years ago my two older daughters lectured me. It was funny actually. They told me that I didn’t listen to them. I was actually confused, because I did, all the time. Yet I didn’t actually. I solved problems. I was being Dad. Fixing shit.

“Sometimes we don’t want you to solve our problems, but for you to just listen to us.” My second oldest said. So I had to learn. I still fix shit in my mind, but I keep my mouth shut.

I can’t fix this.

Autism is a wall, go over it or around it.

That is how I saw it initially. That is a fix it mentality. In truth it’s a rabbit hole. With tweedledee and tweedledum. The Cheshire cat and the White Rabbit. But the Mad Hatter lives there too, along with the Queen of Hearts. And the Hatter and Queen take great offense when my daughter tries to be in our world. Those two force her to stay in wonderland.

It angers me that she lives in this world, so close to ours but a world away. I worry. I have dealt with mean people in my life. I’ve been screamed at by my bosses. Had my heart broke by soulless people. Had people I trusted turn on me.

Haven’t we all?

So in 10 years when her life will really begin, how will she cope? How will she deal with the mean boss? The shitty boyfriend? The back stabbing friend? It was hard enough on my older two. How will someone who has difficulty telling when a person is happy or sad deal with that? Facial Emotional recognition is an issue with Alexis, as with others who have autism. Our facial expressions become a jigsaw puzzle to her, she has trouble understanding our emotions. Hard to convince your daughter you are not happy with her behaviour when she sees my face as ‘joking/playing’ and not pissed.

I know, no really I do, that autism isn’t a death sentence. It isn’t the end of her life. I know kids and their parents that have gone through so much more, real tragedies.

This is not that. Yet I am selfish. This is my baby girl, I worry, I fret, I cry. I can not just fix this. I struggle with that. Trying to fix it. Because I’m a dad, dads fix shit.

I know in time, with therapy, with patience and acceptance that we can give her the skills she will need to enjoy her life. So now I deal with 2 little girls in one. Alexis and Autistic Alexis. They are the same person. I know that, I just haven’t accepted it. Working on it.

Then of course, there is that damn rabbit hole.

I also know that somehow, someway I need to find the rabbit hole. I can’t follow, but maybe, just maybe, I can hand her a pair of glasses to look at my world. To help her focus in on it a little better. If I can’t fix this, then maybe I can find a way to listen better to understand her way of seeing our world and eventually help her see our world better.